Tuesday, June 30, 2009

We have hair loss!! I can't even describe how weird this is (not weird bad, more weird fascinating). I'll run my fingers through my hair, hair that was firmly attached to my scalp as recently as this morning, and my hand will be littered with loose strands. If I actually pull on the ends, I get big chunks. It's not as dramatic as you'd see in a movie about cancer, but it's more dramatic than any hair loss experience I've had previous to this. It's also incredibly messy.

I'm going to shave my head tomorrow. I'm thinking I'll rock a mohawk (technically a fauxhawk, because I plan on having side stubble) for a little while, just because I can, before buzzing the whole thing.

They say that this tends to be the hardest part of being a cancer patient, but I'm really excited. Easily, the best part of having cancer is getting to pull the cancer card. No one can say no to the cancer card. And now I get to WEAR it! I don't even have to pull it! I'm going to be unstoppable! Plus, when else is it acceptable for someone my age to rock a mohawk? But what are you going to say? Nothing! Because you wouldn't deny a girl with cancer her last hairstyle of choice, would you? (See what I did there?)

In other news, it sounds like my chemo dose will stay the same for my next infusion and I will get a Neulasta shot, just like I wanted!

Monday, June 29, 2009

A new update in which our fearless patient gets to spend 3 days watching cable TV while all doped out on Percocet:
The really short version of this story - I spent 3 days in the Mount Nittany Medical Center, because I had an infection and a really low white blood cell count. I'm out now but I can't be in public for a week. The drawn out version, with more quips, is below.

I'm not sure of the best place to start this story, but I've decided to take the long view and talk about my entire chemo experience. As I reported on chemo day, actual chemo and the next few days were a breeze. The Thursday after chemo (day 2), Don and I went to Pittsburgh for a wedding. I managed the car trip, the rehearsal dinner, and the wedding with little trouble (although daily naps were needed). Saturday, the day fatigue was supposed to set in, we drove back to PA for Aaron and Marissa's lovely wedding. I had a short nap before the ceremony and felt great until around 8 pm. Feeling a little tired and achy, I decided to call it a night.

This was followed by 4 days of feeling mildly fluish. I also had a nice rash, and my mouth hurt. Since nearly every malady under the sun is listed as a side effect of chemo, I didn't think much of it until Wednesday when my temperature (which I have to take 4 times per day) exceeded the critical threshold of 100.5. It was 100.6. Being a good little patient, I called the oncologist on call in Hershey, who, after some hemming and hawing, decided I should go to the ER in State College, just in case. Continuing to be a good patient, I did just that.

It was the opinion of both the doctor in the ER and the doctor in Hershey that I was probably just fine, but we should check my white blood count to make sure my immune system wasn't shot (known as being neutropenic). Turns out, my white blood cell levels were nearly undetectable, and, for all intents and purposes, I had no immune system. As a result, I'd gotten what's known as a neutropenic fever, which is when basically anything in the environment causes an infection. While I was freaking out about the possibility of getting a staph infection from being in a hospital with no immune system (staph infections being one of my biggest medical fears, up there with cancer, anterograde amnesia, and shingles), I paused to self soothe by thinking of the positives in this situation:
1) Having no white blood cells means my tumor should fear me like the fist of an angry god, because the chemo is slaughtering all of my quickly dividing cells.
2) Maybe all of this wonkiness I've been feeling is not a result of chemo itself, but a result of a subsequent infection.

While I was thinking these things, the hospital staff was admitting me and took me to a nice room with a view of some cattle. At this point, it was 5:30 am and I'd spent all night in the ER, so I was hoping to get some sleep. Instead I got a nice migraine. (As some background, I get what are known as classic migraines, which means any pain is preceded by a half hour of warning in which about 50% of my vision gets filled with patches of what looks like TV snow.) So, I stumbled around the hallway until I found someone who could find a nurse. While I was waiting for the nurse, I self-soothed by thinking, "This is the hospital. They get patients with migraines all the time. They can just give me a shot in my port and it will go away." Instead, the nurse came by and told me I was only approved for Tylenol. Once again, I'd met my old nemesis Tylenol. I told the nurse in that Tylenol was not an appropriate pain reliever for a migraine, and she needed to find a doctor to prescribe something different.

Also, during my aura, I met with an infections disease specialist (or, from what I could see, about half of an infectious disease specialist) who told me that the crazy rash was....wait for it...shingles. Yes! I have managed to acquire not one, but two of my most feared medical maladies within 2 months!! Way to go me for facing my fears! He also said I had oral thrush (like a yeast infection for your mouth!), and I needed to be in IV antibiotics until my white cells came back up. Then the nurse came back and told me the doctor had prescribed percocet for the migraine. Now, percocet is not really an appropriate treatment for a migraine either, but I could no longer muster any righteous indignation.

So, Cassie came by, and I spent the rest of the day doped up on percocet, hooked up to an antibiotic IV (through my port, which I've come to really appreciate), watching Millionaire Matchmaker on the cable TV and taking Valtrex (which, thanks to their genital herpes commercials, made me feel slightly skanky). The next day, Friday, my WBC was up only marginally, so the oncologist overseeing my treatment decided to give me a shot of a drug called neupogen, which makes my bone marrow produce more white blood cells and causes really weird, terrible bone pain (that means it's working). While the bone pain sucked, it did entitle me to more narcotics, which really help to pass the time in the hospital. So if you replace Millionaire Matchmaker with Housewives of Atlanta/New Jersey and add a few antifungals in with the Valtrex, you basically have my Friday and Saturday. The neupogen worked like a charm and by Sunday, my white blood cell count had gone from .02 to 12! They let me come home, where I have no cable or addictive prescription drugs.

I'm at home now, armed with prescription antibiotics, antifungals, and antivirals (and magic mouthwash...it's magic!). My immune system and everything else is on the mend, but I'm not allowed to go to public places for 5 days, after which point, I'm supposed to get permission from my oncologists at Hershey before returning to work. (at least according to my little form).

So, some frequently asked questions:
1) What does this mean for your clinical trial?
Apparently, clinical trials have mechanisms to handle "adverse events." Essentially, two things can happen. I may either get a lower dose of the chemo drugs in my next infusion/pill, or I may get a neulasta shot (similar to the neupogen shot) the day after my infusion. I'm hoping for the second option since the current dose of chemo is kicking my cancer's butt (I can already feel changes in the tumor size), and neupogen was so successful for me.

2) Have you lost your hair?
Not yet. It is supposed fall out 10 to 14 days after the chemo dose (although it sometimes falls out only after multiple doses). Monday will be day 14, and my hair is currently firmly attached to my head. I've run out of shampoo (I'm currently using the Suave we bought for the dog), and I've spent a lot of money on cute hats. I think the value of the cancer card goes way up once the bald head is involved, and I'm going to be pretty upset if I don't get to enjoy every last perk that cancer has to offer.

3) Is there anything you can do?
Since Don works from home and Cassie left the Philippines to come take care of me, I'm pretty set in terms of actual manpower. However, things like mixed CDs really help on the car rides back and forth from Hershey. And old books and magazines have been fantastic for mitigating the waits at various doctors appointments. So, if you'd like to help, but you're at a loss, these sorts of things have been great. And of course, just hearing from people is really, really nice!

I think that's it for this novel of an update!

Tuesday, June 16, 2009

Got my first round of chemo today. Not too much to report, really. I feel pretty good, although a little tired. That may just be due to the ativan aperitif they gave me before starting in on the entree drugs. Unfortunately, I'm not too nauseous, which means that my dream of being able to spontaneously vomit on people who annoy me remains out of reach for the time being. Today through Thursday are supposed to be my big nausea days. Apparently, my big fatigue days will be Saturday (in time to be a real drag at Aaron's wedding) and Sunday, and the days when I'm most susceptible to infection will be between day 5 (Saturday) and 10 (whatever day is 5 days from Saturday). Infection results in IV antibiotics, which seems a little too dramatic for my taste, so you can expect some OCD handwashing during those times.

Fun fact - Some of the additional effects of my anti-nausea pills include: improving social interactions, mood, expression of mood, and appearance. I'll be interested in feedback from you to see how that is working out for me.

Also, it was luau day in the pediatric clinic, so the halls were filled with nurses in grass skirts and coconut bikinis. I hope they start having theme days on the cancer ward!

Sunday, June 14, 2009

Thursday -
I'm going to gloss over Thursday, because it involved a trip to the DMV, which no one wants to hear about. We also drove back up to Hershey to get an echo cardiogram (cool!) and an EKG (boring) as baseline measures before starting chemo.

Friday -
Cass and I woke up before the sun to get to Hershey for our 6am surgery call for my port installation. My port is a little plastic device that sits right under my skin below my clavicle on the left. It has a little sort of reservoir thing you inject into, and then a little tube that runs through a vein (when the doctor said which vein, I thought "oh, I've heard of that one," but now I can't remember which it is) and empties out right into my heart. RIght into my heart!! That's crazy! They said I would be awake for the procedure, but this was totally a lie. Maybe I'm sensitive to anesthesia or something, but I was dead asleep through the whole thing. I do remember that they put a little hood over my face, ostensibly so I couldn't see them putting a tube into my heart, but then I feel asleep, so I wouldn't have seen anyway. Once I'd woken up, eaten my graham crackers, and had a delicious full-sugar soda, I asked the nurse for some tylenol (having already been told that tylenol would be enough to kill the pain...yet another lie). She asked, "Do you have a headache?" I was all, "No lady, you just installed a little plastic tube in my heart and it hurts." I should have known that was the time to demand the good stuff, but I was groggy and didn't have my full wits about me. I was given a box lunch (which did not include a cookie!) and discharged. On the plus side, I did get to watch some cable TV while waiting for the anesthesia to wear off, and I got to complain a lot about how sore my port was when I got home. I would like at add an additional amendment to the healthcare bill called, "If you have to have anesthesia, you get a vicodin."

One other note about the port - I'm not supposed to shower until Wednesday, so if you see me, keep your distance.

So, that's the news from this week. I start chemo on Tuesday, and I'm thoroughly looking forward to that adventure. I bought a few cute new hats to wear once I'm bald. I've been considering shaving my head before starting the treatment, because everyone says it's a good idea. But, in typically stubborn HM fashion, I'm convinced that if I do that, I will be the one patient who doesn't lose her hair and then will be stuck with a superfluous buzz cut. So, the hair stays at least through next weekend.

I'm still in a great mood, helped by the news about being a postmenopausal woman, the scan results, and getting to spend a couple nights with my good friend Becca (seriously, if anyone wants to see some cute twins, she's got them). I'm sure the prophylactic antidepressants that my oncologist prescribed (they are good for hot flashes and the blues) are helping, too.

As always, feel free to share this news with whomever you like, and let me know if you don't want these updates (I promise I won't judge). One final note - One thing about having traumatic news is that you get an increase in personal communication. I LOVE THIS! I've been so touched by the love that I've received during this time, and I wanted to make sure that you all know that! If I don't respond to you right away, please, please, please don't think that I don't appreciate and adore your support. Calling doctors and going to appointments has been pretty much a full time job at this point, so I'm way behind on pretty much everything else.
Wednesday - Chemo doctor #2 (electric bugaloo) and the Plastic Surgeon
We started off Wednesday with an appointment with a medical oncologist at Hopkins. Astute readers will remember that the surgeon at Hershey wanted me to have surgery first and then chemo, while my team at Hershey advocated for chemo first and then surgery. Both cited data that the survival rates are the same regardless of order, and I was already pretty sure that I wanted to do chemo first to take care of any of those micrometastases as quickly as possible. However, I also wanted to talk to a medical oncologist at Hopkins to see if a) the surgeon was recommending surgery because he was a surgeon, b) if there were any drawbacks to doing chemo first and c) if Hopkins recommended a different course of chemo.

I'll start off by saying that I loved the medical oncologist at Hopkins (I also love the one at Hershey). She was incredibly thorough. She told me that it was entirely reasonable to have chemo first, and in my case, she would recommend it as well. She looked at the regimen that my clinical trial involves and said that was very reasonable and aggressive. She said that if she was in my place, she would also choose to do the clinical trial. She also said that there is absolutely no benefit to choosing Hopkins over Hershey for chemo, especially since I'll be part of the clinical trial and my treatment will be highly standardized. She did mention that it might be worth going to Hopkins for surgery, and that people frequently choose to get their chemo at one hospital and their surgery at another. I think I will go for another surgical consult at Hopkins (I didn't much like the surgeon I met there last week) before deciding what to do.

She also told me that I have "the cancer of a post-menopausal woman," which caused me to have to hug it out with her (I've realized that I have this annoying habit of saying, "Let's hug it out" any time I need a hug from my doctor). So, one thing I've been reluctant to mention is that, contrary to what you'd think, having breast cancer young is actually really bad. The prognosis for most young women with breast cancer is much worse than it is for post-menopausal women. Part of the reason is that, like in my case, the cancer is caught much later than it tends to be in older women, because young women don't undergo breast cancer screening. Another part of the reason is that young women tend to get a more aggressive form of the disease that is unresponsive to hormonal treatments. Apparently, I don't have this type of cancer at all. Instead, I have a cancer that is much more treatable. So, this is fantastic news.

She told me that if my bone scan and CT scan didn't come back clean (I hadn't gotten the results at this point), that metastasized breast cancer is more like having a chronic condition like diabetes or kidney disease than a terminal illness. This was, and continues to be, a huge comfort.

Finally, she mentioned that she'd mail me a copy of her dictation notes. I pointed out that the dictation notes at Hershey called me "lovely" and "very pleasant," and that I fully expected her to up the ante. She promised that she would, so I'll report back once I get the notes. Ideally, I'd like to start a compliment war between my various doctors.

The plastic surgery consult was pretty much a waste of time. Apparently, I can't have implants because I'll need radiation. (I'll need radiation, despite having a mastectomy, because there is lymph node involvement.) I did learn that I don't have enough fat on my stomach to do a breast reconstruction, so I'd have to use butt fat. I think that's flattering, but I'm not sure. Also, the nurse that spoke with me had had a fascinating amount of work done. As many of you know, I'm a big fan of playing "guess what work the celeb has had done," so the opportunity to play in real life was a treat. I'm almost positive she'd had cheek implants and forehead botox, despite looking younger than me (although maybe she only looked younger than me because of the botox). She may have also had cheek botox and/or collagen, because she couldn't move her lips properly. Her lips were full, but they didn't have that weird underlip feature that is typical of fresh collagen. She looked so overdone that she was starting to fall into the uncanney valley. The doctor, on the other hand, looked like she hadn't had a haircut in 15 years. An interesting pair to be sure!

Next up, we soldier on to Thursday and Friday.
did receive news that THERE IS NO EVIDENCE THAT MY CANCER HAS METASTASIZED OUTSIDE OF THE BREAST! I do NOT have Stage IV cancer. Now, that being said, there is a chance that I have what are called micrometastases, which are cancer cells that have spread in the blood stream, but with any luck, chemo and hormonal therapy will get all of them.

I think to make this simple, I'll just go in chronological order.
Tuesday - Don, Cassie, and I woke up bright eyed and bushy tailed at 5 am to make it to our 8am appointment with a fertility specialist at Hershey. Why did we see a fertility specialist? Well, the chemo will probably shut down my ovaries for a time, and some women don't regain their cycle. Both my chemo doctor at Hershey, the fertility specialist and the chemo doctor I saw at Hopkins (we'll get to her on Wednesday) all think that I'll be fertile (like the Nile) after I finish chemo. However, soon afterwards, I start hormonal therapy, which typically last for 5 years and also precludes pregnancy. So, Don and I wanted to see what our options are. It turns out all of the options are a) experimental, b) would delay chemo, c) expensive, and d) don't have great success rates. Don and I decided that we'd save our money for either trying after hormonal treatment or adopting. Since neither of us have ever been 100% sure that we want kids, we're completely okay with this.

At this point, Don peeled off to return to work and Cassie was my partner in crime for the rest of the week. Also, at this point, Tuesday gets a little crazy. Originally, I was just scheduled for a bone scan and a CT scan, but the clinical trial that I'm a part of requires some additional breast biopsies, some blood work, and of course, a bunch of consent forms. So Cass and I are running around trying to fit all of this in. First, we go to radiology, where they give me an IV and inject me with contrast. Usually, you get to wait around for a few hours and relax before they scan you. I, on the other hand, run across the medical capus with an IV tube hanging out of my arm, to give blood at the cancer center, thinking, at least they can take it out of the IV. Only they can't. So, I leave the cancer center with an IV in one arm and pressure bandage on the other to go the breast center. There, they take not 1, not 2, but 5 tissue samples. So, when I finally return to radiology, I not only have the IV and the pressure bandage, but also ice stuffed into my bra. I was a hot mess.

I would also like to take this opportunity to suggest an additional reform to the health care legislation, called the "If it requires lidocaine, I get a vicodin" measure. When someone takes 5 chunks of your boob out (I was starting to worry that there would be no tumor left), and then hands you two tylenol, you feel a little shafted. Then, when you're sitting in the bone scanner (I have no idea what the real name for this machine is) and you start to feel like the machine is going to pick up the throbbing from your now holey breast, you really start to feel like a narcotic is not an unreasonable request. We'll return to this rant when we discuss the port insertion.

The rest of the day was uneventful. My bones got scanned, which was cool because you could see my internal organs on the monitor, and then they did a CT scan of my chest. I will say that I was required to stop eating at 10:15, even though my CT scan wasn't until 3:30, and this was a brilliant move on the hospital's part. I was so hungry by the time I had to drink my contrast, that it tasted delicious. Once these tests were over, Cassie and I drove down to D.C. to stay with a friend of mine before going to see some additional doctors at Hopkins.

Next up...Wednesday at Hopkins

Tuesday, June 2, 2009

And now, for Part II - Our fearless patient walks the mean streets of Baltimore for her 2nd opinion
This part was less eventful. Citing the same research that my chemo doctor did, the doctor at Hopkins thinks that I should have surgery first and then get chemo (opposite of what they want me to do at Hershey). Again, survival rates are the same either way, but his feeling is that we need to get the tumor out first, since that's where the cancer originates. I'm going to talk to my doctors at Hershey and give them a chance to rebutt, then read the actual study regarding survival rates, and then make a decision. I really like the doctors at Hershey and I would like to kill any potential cancer elsewhere first, so I'm leaning towards Hershey right now. However, I haven't made any final decision. My friend at Hopkins is scheduling an appointment with a medical oncologist (chemo specialist) there to chat about it further.

Funny story about Baltimore: We stopped to get gas near the Baltimore projects (what isn't near the bmore projects, you ask? heck if I know) and Don got hustled. He tried to pull the "my fiancee has cancer" card, but the junkie came right back with, "That's terrible. You know, I have MS, but don't have any money for treatment." Don ended up giving him $10. We need to look into ways to harness the creative powers of junkies for good. Or perhaps we've already done that, and it's called advertising.

I've gotten a few questions about what stage I'm in and whether the cancer has spread. The short answer is, I don't know the answer to either question yet. I have a CT scan and a bone scan scheduled for Tuesday (6/9), which should give us an indication if the cancer has spread anywhere beyond the breast. Typically breast cancer spreads to the bones, liver, lungs, and brain first. When I had my MRI last week, the doctor said that she could see some of the liver and bones on the MRI, and they looked okay. That's not definitive by any means, but it is a good sign. I believe I get staging information after these tests, but then my chemo doctor said that they typically do staging information after surgery. Part of the staging criteria depends on how many lymph nodes are involved, and they determine that after they've been removed during surgery. I do know that my tumor is 5.5 cms, and from what I've read online (dangerous, I know) that means it's at least a Stage III cancer. However, no doctor has told me anything about staging, so that tidbit may be meaningless.

I was a little mopey last week, but I've been in a great mood this week. My chemo doctor at Hershey emphasized how treatable this is and the surgeon at Hopkins seemed to feel that the cancer was localized in the breast. I think I just needed a little medical reassurance that I probably won't die to chase the blues away. I really will never have an excuse to wear crazy wigs with impunity again, and I think this port may act as the ultimate gross out card. So, as long as I

Part I

Time for a new cancertastic update! This one will be in two parts.

Part I - Our fearless patient learns all about chemo
Did you know that chemo will make your head hair fall out, but not your other body hair (which seems tragically unfair)? Also, if you get a prescription for a wig, it's called a cranial prosthesis. I met with my chemo doctor at Hershey on Monday. We're waiting for one test result (HER2, for those of you who know stuff about cancer) to come back, but the plan is to start chemo on 6/16. The exact type of chemo will be determined by the result of that test and whether I decide to participate in a clinical trial (I think I will, because I like being part of medical science). The doctor told me that I will get an infusion (which sounds like a delicious tea, but is just medspeak for getting medicines injected straight into your heart) once every 2 to 3 weeks. I will be nauseous for a day or two following the infusion (again, that sounds so pleasant) and then will probably be fatigued the following weekend. She said most people work full time during chemo, but that I need to be hypervigilant about avoiding infection. I will be able to work with the monkeys but should avoid the lab during the days when my white blood cell counts are the lowest.

The doctor said that chemo is effective on 95% of cancers and can shrink tumors substantially (which is important because my tumor is big). Hershey is in favor of chemo first, then surgery, which will come into play when we get to part 2 of this e-mail. They like to use chemo first for two reasons: 1) they can tell if it's working if my tumor is shrinking which tells them that 2) if the cancer has spread elsewhere, the chemo is treating it immediately and effectively. Survival rates are the same whether you do chemo before or after surgery.

One other note - I will get a port, which is a little thing they'll install in my chest with a venal catheter that goes straight to my heart. I'm not sure how I feel about this. Part of me is squicked out, and part of me feels like it's kind of badass. I asked my friend Gabe, who is a med student at Hopkins, why they don't install them for heroin addicts as a risk mitigation measure. He said it's illegal, but there was an anethesiologist at Hopkins (who had a drug habit of his very own) that got caught installing them for other addicts for $1,000 a pop. Scandalous!

This post is getting long, so I'll start a new one with Part II.